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Wednesday, December 23, 2015

If you have been told you have a blighted ovum but are worried because you've heard or read about all the women being misdiagnosed with a blighted ovum, there is a way you can be certain before letting the doctor end your pregnancy*.

If you are not yet nine weeks along and your gestational sac is growing but not yet over 25mm, there is still hope.

A few things to remember:

One ultrasound is NOT enough to diagnose a blighted ovum

Your ultrasounds need to be at least one week apart to really see if there is growth

Measuring one to two weeks behind is common in many viable pregnancies (it's the equipment, not you!).

Generally, the gestational sac will measure more than 25mm by about nine weeks. Diagnosing a blighted ovum earlier than nine weeks is just too early.

If there is a yolk sac this is NOT a blighted ovum. Doesn't mean your pregnancy can't end in miscarriage but, generally, one week after the yolk sac is viewed, the baby will be seen if the pregnancy is viable.

I get quite a few women messaging me or posting just to ask if they might be misdiagnosed. Because I am not always able to respond promptly, I can give you my answer before you even post:

If you are not yet nine weeks along and your gestational sac is growing but not yet over 25mm, there is still hope.

*if you do not feel your doctor is doing enough or you feel pressured to end your pregnancy, seeking a second opinion might be a good idea.

Wednesday, November 4, 2015

Over the years, I have seen a few reasons doctors are more apt to misdiagnose a miscarriage. A growing, empty-looking gestational sac is probably the most common reason behind a misdiagnosed miscarriage. Measuring a week or two behind during the ultrasound causes many to be misdiagnosed as well. Women with high hCG levels and no baby is seen is another. These are all topics I have covered here on my blog.

Another fairly common reason a viable pregnancy is misdiagnosed as a miscarriage is because the hCG levels either plateau or drop.

Before I begin, let's just state the obvious. Yes, dropping hCG levels can be a sign of impending miscarriage but not always. Let's look at some examples of misdiagnosed miscarriages because of dropping or plateauing hCG levels.

The first group of women are usually very early in the pregnancy and their levels are still under 1,000.Mary's story (click on the links to read these stories) is a perfect example. Not only had she had IVF so doctors were certain of dating, her levels started off low and had very slow doubling times. Mary went through several weeks of being told her pregnancy was non-viable before finding the heartbeat. She went on to have a beautiful baby boy.

In this same group of women, we have InGodsTime story. The first hCG draw showed a level of 25.8. Three days later it had dropped to 24. The doctors told her to expect to start bleeding soon. They were wrong and she has a baby girl now to prove it :)

Why did these women have hCG levels that started off slow or even dropped? Over the years, we've seen on the site that dehydration seems to play a role. You need to stay hydrated but don't overdo the water either. Illness may also be a reason. Whatever the reason, we've had numerous stories of levels plateauing or dropping very early on and women went on to find their babies.

A caution though, slow-rising, declining or 'bouncing around' levels may indicate an ectopic pregnancy. For this reason, you need to stay closely monitored until a gestational sac is viewed.

The second group of women have levels that slow down after they reach 1,000. Let me just state first of all, this is normal. I have talked about typical levels on myThe First Trimester and Non-Doubling hCG Levels page. Before they reach 1,200, they can double in two to three days and be in normal range. Between 1,200 and 6,000, they can double in three to four days and be normal. After 6,000 they typically slow down and we've seen a number of women whose hCG levels plateaued between about 30,000 and 50,000 and did not go any higher. This is normal.

Cherbear's story is a fairly typical one. Her hCG levels went up to the 70,000s, slowed and started dropping. Her doctor diagnosed a miscarriage. BelieveNPrayer has a similar story. Her levels went up to the 40,000s and started declining. Both women were misdiagnosed with a miscarriage.

The Misdiagnosed Miscarriage site has many more stories like these. What you need to take away from this blog post is that declining hCG levels do not necessarily mean a miscarriage. In fact, after the gestational sac is viewed, many doctors no longer take hCG levels because they can go up, stay the same or go down and be normal. The most important thing is to make sure they find the gestational sac and, after that point, watch the size of the gestational sac. Doesn't even matter if it measures a week or two behind. What you want to see is the sac growing from week to week. If your sac gets to be more than 25mm and no baby is seen then you likely have your answer.

Monday, September 28, 2015

Over the years, I've been contacted by a number of women who are scared they have a blighted ovum because at seven or eight weeks their gestational sacs look empty. They assure me they have seen their babies by this time in the past and, for that reason, they have no hope. Yet, a number of those women ended up finding their babies with a strong heartbeats.

Today's misdiagnosed blighted ovum story was shared with us by Fathi (her post can be found here: misdiagnosed blighted ovum at 8+weeks ). Fathi shares that at just over eight weeks, her doctor did not see her baby and was pretty sure it was a blighted ovum. Rather than wait one week for a follow-up ultrasound, Fathi waited two and, yes, she found her baby.

Fathi was surprised for two reasons. First, she had seen her other babies well before eight weeks and second, she doesn't have a tilted uterus.

I've learned over the years that a tilted uterus does not always stay in the same position. It can change from pregnancy. Just because you did not have a tilted uterus before does not mean you don't have one now. And, we know that with a tilted uterus, babies are often seen a bit later. For this reason, as I've blogged many times e.g. Medical Researchers Are Warning that Viable Pregnancies ARE Being Misdiagnosed as Miscarriages, a blighted ovum should not be diagnosed before the gestational sac is more than 25mm.

And, yes, this is for women who have been told they do not have a tilted uterus as well. As you can see from Fathi's story, even women with a non-tilted uterus sometimes have to wait to see their babies.

Don't expect to see your babies at the same time during each pregnancy. Instead, focus on the size of the sac. If it is growing and not yet over 25mm, you still have hope. Usually this happens at about nine weeks or so.

Sunday, September 27, 2015

For more than ten years, we've been raising the alarm. Too many women with viable pregnancies are being misdiagnosed as having miscarriages. Many women have refused to end their pregnancies until they were 100% certain they were indeed going to miscarry and, as a result, many babies have been saved.

For years, doctors denied this was happening...despite the fact that we had already collected hundreds of stories at The Misdiagnosed Miscarriage. All of that is changing.

This week, we have two new news articles on the problem of misdiagnosed miscarriages:

If you are being diagnosed with a blighted ovum, here is our takeaway message:

- Is the gestational sac greater than 25mm?

If the sac is greater than 25mm, this may indeed be a blighted ovum. My own gestational sac measurement 28.5mm before my daughter was found and I had had to turn down the D&C twice. If this is your first ultrasound and there are no complications, one more ultrasound a week out might be a good idea to verify.

- If the gestational sac is not yet greater than 25mm, is it growing?

To know if the gestational sac is growing, you should space your ultrasounds out by a week to verify growth. As I've blogged, measurements can vary between techs but a week gives enough time to see some definitive growth.

- Are you more than nine weeks?

We've just talked to too many women who were about nine weeks, myself included, before finding their babies. I'm a firm believer that if a sac is growing a blighted ovum should NEVER be diagnosed before nine weeks.

- Is your doctor monitoring your hCG levels?

If so, stop!!! Once the gestational sac is viewed, there really is no reason to monitor your levels. Levels can go up and be normal. Levels can plateau and be normal. Levels can even drop and be normal. Levels are good for confirming pregnancy and confirming this is not an ectopic pregnancy. I can't tell you how many women I've talked with who were scared needlessly because their doctors kept monitoring their levels after the sac was viewed.

- Have you seen a yolk sac?

If so, this is NOT a blighted ovum. A baby is needed for a yolk sac to form. That doesn't mean this can't end in miscarriage but it does mean this is not a blighted ovum.

And, during this time, stay monitored. If there are any complications be seen right away. In the meantime, space those ultrasounds out by a week each. If you feel your doctor is pressuring you to end your pregnancy too soon, please find another doctor. Although it is slow going, more and more doctors are accepting that they have been diagnosing miscarriages too soon.

If you are going through this scare, ((((hugs)))) from somebody who has been there.

Saturday, August 8, 2015

Despite the fact that doctors tried to end two wanted pregnancies this week, two babies survived.

I'm used to hearing about misdiagnosed miscarriages. I hear a new story just about weekly and sometimes several in a week. Can you imagine how many women never find The Misdiagnosed Miscarriagesite and are misdiagnosed as well. Misdiagnosed miscarriages are a big problem. They can end a wanted baby's life.

Even sadder, imagine how many women are incompetently diagnosed by these doctors and have their pregnancies ended? It happens and it happens too often.

Today, I read two posts by two different women. One woman was given Misoprostol to end her pregnancy. Her doctor scared her into a medicated miscarriage.

Note here: if you are not 10 weeks or more and there are no obvious complications, many doctors are fine with you waiting out a miscarriage misdiagnosis.

Anyhow, despite taking the medication, a week later, a baby with a strong heartbeat was found (for more on Anie's story: told Miscarriage, Took Misoprostol. HB Found!!!
While continuing to read posts, another woman reported that her doctor diagnosed an ectopic, performed laporoscopic surgery, did not find evidence of an ectopic pregnancy so performed a D&C. Imagine this mom's surprise when an ultrasound a few days later found a gestational sac complete with yolk sac (perfectly normal this early in a pregnancy (for more on Beksmel's story: Confused - Pregnant or not after laparoscopy and D&C for ectopic

There are no guarantees on these babies. We've seen some babies survive these procedures and are just fine while others go on to miscarry later.

I am just a firm believer that if there is no immediate need for a D&C before ten weeks, a woman should stay closely monitored and take a watch and wait approach. If she feels pushed into ending her pregnancy before she is ready, she should seek out a second opinion. Yes, some women will miscarry naturally during that time but others may end up finding their babies.

Please, pray for these two women and their babies. My hope is that they go on to have uneventful pregnancies.

If there are serious complications, ending your pregnancy right away may be necessary (i.e. infection setting in, ectopic, molar pregnancy, etc...). If your doctor does believe there is a serious complication but you are not convinced, you may decide to seek a second opinion but, please, do it right away.

"About 50% of women who miscarry do not undergo a D&C procedure. Women
can safely miscarry on their own, with few problems in pregnancies that
end before 10 weeks. After 10 weeks, the miscarriage is more likely to
be incomplete, requiring a D&C procedure to be performed. Choosing
whether to miscarry naturally (called expectant management) or to have a
D&C procedure is often a personal choice, best decided after
talking with your health care provider."

Please take note:

"Women can safely miscarry on their own, with few problems in pregnancies that end before 10 weeks."

The takeaway is this: If you are not 100% certain of your miscarriage diagnosis and there are no complications -or- even if you are certain and would prefer to miscarry on your own, waiting for a natural miscarriage is an option many women choose. You should not feel pressured to have a D&C if you do not want one. You can always choose to have the D&C at a later point. You should not feel rushed.

After ten weeks, miscarriages may become more complicated and a D&C may be the safest way to go. Talk to your doctor and the two of you can determine your best course of treatment.

As always, seek a second opinion if you are at concerned that your diagnosis might not be an accurate one. This isn't false hope. This is just being 100% certain before you end your pregnancy.

Friday, May 29, 2015

Yesterday Michelle posted on The Misdiagnosed Miscarriage site about her misdiagnosed miscarriage. Her doctor had been trying to convince her to end her pregnancy for weeks before she pulled out her trump card. She told her the pregnancy was likely molar and she needed to end it now. Michelle refused, got a second opinion, and saw her baby with a strong heartbeat.

So, you've been diagnosed with a molar or ectopic pregnancy, what do you do? Both these types of pregnancies can have very serious consequences including death. You have to take this sort of diagnosis seriously but you also want to know that is correct, right?

And, so, I wonder if *some* doctors pull the ectopic or molar card because they have made up their minds and are likely slighted bugged that you aren't in total agreement.

But, on the other hand, ectopic and molar pregnancies are fairly common.

What is a mom to do?

My doctor did try to convince me, strongly convince me for two weeks to have a D&C with my daughter. Thank goodness I knew two people who had serious complications from D&C and could no longer conceive. I declined.

Let me pause a moment to say that while I turned down the D&C, D&Cs do have their place. If there is an emergency or you are more than 10 weeks along, a D&C may well be needed and your best hope. For me, though, I was fine. There were no complications and I was still less than 10 weeks. For more on my story: When a Blighted Ovum is Not a Blighted Ovum

To give my doctor credit, I don't think he was trying to scare me because he was tired of seeing me and wanted to move on. He was a newer doctor who had just come out of med school and honestly believed the textbooks on blighted ova were correct (they're not).

However, I've talked to more women than I can count over the years who have shared how rude some physicians have gotten when they've questioned the diagnosis. With everything still looking normal, they've been told they need surgery immediately. I have no doubt many women end up having the surgery. I hear from the ones who do not and some have found their babies.

I once asked a doctor why other doctors are so quick to push the D&C or medicated miscarriage. His response? Because doctors really do believe they are correct and they don't want to be called in the middle of the night to meet you in the ER or answer questions about your pregnancy.

Because an ectopic or molar pregnancy can have serious complications, just waiting it out may not be an option. Your best bet is to get a second opinion as soon as possible especially if you feel your doctor is overly pushy or rude. You may end up needing that surgery but I do believe a woman deserves to know with 100% certainty that her pregnancy is failed before having that surgery. Find a physician who will really listen to your concerns.

If you are going through a miscarriage scare right now, I don't know how this will end. Just stay monitored and get a second opinion if you think one is warranted.

Wednesday, May 20, 2015

I had actually shared my own misdiagnosed blighted ovum story a year or two before I started the site. Slowly messages started popping up. Women were wondering if they could have a misdiagnosed miscarriage as well. At that time, a Google search of 'misdiagnosed miscarriage' turned up absolutely nothing related to misdiagnosed miscarriages. That's right, nothing! I scoured the web for help. It certainly could not be found on pregnancy/miscarriage forums. General consensus was to get a D&C and move on.

With the advent of the site, I also was surprised by the backlash. Women were upset that I believed I was misdiagnosed. I was assured by many including one woman who ran a website for women going through miscarriages, that my story was a fluke and doctors would never ever EVER misdiagnose a miscarriage.

Ten years later, and Google results show tens of thousands of pages when you search for 'misdiagnosed miscarriage'. Our site has nearly 700 misdiagnosed miscarriage stories. In fact, there are probably more because women will discover they are misdiagnosed and with the sheer number of posts, their story never gets moved to the Misdiagnosed forum. Looking at my gmail account, I have probably received about 10,000 emails from women about the possibility of a misdiagnosed miscarriage. A number of those women have been misdiagnosed. I can do that Google search and find stories all over the web by women who were also misdiagnosed.

What a difference ten years makes!

And, your stories matter! Ten years ago, doctors were constantly telling women miscarriages are never misdiagnosed. Now, the UK has recognized this is a real problem and has changed their guidelines in diagnosing a miscarriage. If they stick to these guidelines, I'd guess they'll eliminate at least 90% of misdiagnosed miscarriage cases. I hope the United States and other countries are not far behind.

What can we conclude? Miscarriages can be and are misdiagnosed. Every story shared helps so many people and gets the word out there. Each of you sharing a story is making a difference and saving lives.

Tuesday, May 19, 2015

Ten years ago, Stacy posted on The Misdiagnosed Miscarriage. Her doctor had given her no hope due to an enlarged yolk sac and told her to expect a miscarriage. Her doctor was wrong. Stacy went on to have her baby boy and he was perfect in every way.

Since Stacy's posts, I have talked to so many women who have been given little to no hope because of an enlarged yolk sac. I will say up front that, yes, some have gone to miscarry but, then again, many women without an enlarged yolk sac have gone on to miscarry. I've talked to a number of women who continued their pregnancies and went on to have babies who were just fine.

Could the problem be that the tech is making an error with measurements? I believe that answer is a yes. Why do I believe that is a possibility? I've written a series of blog posts on the unreliability of ultrasound measurements:

If studies are showing that ultrasound measurements can vary 8mm with different ultrasound techs, women with 'enlarged' yolk sacs need to take note. Could your tech be wrong? Absolutely. That 8mm sac might only be 5mm. On the other hand, could your yolk sac be enlarged? Sure but there are numerous stories from women who went on to have their babies.

Enlarged yolk sac? Don't give up hope just because your doctor has and, please, really think about the D&C you are being offered before you have it. If there are serious complications, then yes, that D&C may be needed but if it is just because of an 'enlarged' yolk sac, it may be time to find another doctor.

At about six weeks, Korin had an ultrasound. Because they saw an empty gestational sac, the midwife told her she believed it to be a blighted ovum and wanted to check her hCG levels.

A comment from me about this: Most doctors will not check hCG levels once the gestational sac is seen. Your numbers could be high or low and be normal. They could rise, plateau or even fall and be normal. All hCG levels do with a diagnosis of suspected blighted ovum is to worry Mom unnecessarily.

Korin's hCG levels came back in the 20,000s which is perfectly normal but the midwife diagnosed a blighted ovum because there was nothing seen in the sac. Korin did not want a D&C and chose to wait.

Two weeks later, Korin saw the heart of her little one beating away.

I know I blog about this topic a lot but hCG numbers should NOT play a role in a blighted ovum diagnosis. I've talked to women who had numbers much higher who did not see their babies until later. The diagnosis of a blighted ovum should be based on the size of the gestational sac if the sac is growing. You'll want to see the sac grow to at least 25mm before a blighted ovum should even be suggested.

In fact, that reminds me of another recent story on the site. Rachel shared how her doctor felt her hCG numbers were too low and with no baby seen yet, she needed a D&C. Thankfully Rachel's husband demanded another ultrasound two hours before the procedure and, you guessed it, they found their baby. You can read her story here:

This is why I strongly believe a blighted ovum should NOT be even suggested before the gestational sac reaches at least 25mm. Had that doctor just said, "It's still too early, come back in a couple weeks," Rachel would not have been so upset. In fact, with my first pregnancy, most doctors would have likely suggested a blighted ovum like they did with my second pregnancy. When they couldn't see my baby, the just said that it was too early and to come back in a couple weeks. I was probably between eight to nine weeks when they found him. Because of how they approached it, I figured all was normal and didn't even worry about not seeing him.

If your gestational sac is growing and still smaller than 25mm and there are no complications, take a deep breath. This pregnancy is still too early to diagnose as a blighted ovum. Everything may still be normal. Hang in there and leave a message. I'd love to hear from you. (((Hugs)))

Saturday, March 28, 2015

If you are being diagnosed with a blighted ovum just based on your hCG levels and no baby being seen, your doctor is wrong.

Let me repeat...

Your doctor is wrong!

If your doctor has not been telling you the size of your gestational sac, you need to ask.

Going to repeat again...

Blighted Ovum scare? Ask the size of your gestational sac at each appointment.

If this is a blighted ovum scare, you don't need ultrasounds every two to three days. This is self-defeating. It'll leave you worried. Gestational sacs need time to grow. They don't grow much in two to three days. If your pregnancy is indeed viable, your baby needs time to grow and be seen. Give it a week.

You can wait longer but, really, the waiting is torture, a week is fine. Please, keep in mind, I had to go almost a month before finding a baby in my gestational sac and the sac measured 28.5mm. At only 21.5 mm, it still looked empty.

I know you are worried but if there are no serious complications (i.e. threat of ectopic, infection, etc...) make sure your ultrasounds are scheduled one week apart.

Also, so important, once that gestational sac is seen, hCG levels do NOT need to be taken. They can rise, plateau or drop and this can still be a viable pregnancy. I have talked to women whose hCG levels were over 100,000 before they found their babies. I've talked to women whose hCG numbers seemed to plateau around 30,000 to 40,000 and then went on to find their babies.

So what should the size of the gestational sac be before a blighted ovum is suggested?
I love the UK's new guidelines. I oft repeat them because these guidelines would do away with the majority of misdiagnosed miscarriages.

The gestational sac should measure at least 25mm before a blighted ovum diagnosis is even suggested.

Want to know more about these guidelines? I blogged on this last year:

Your ultrasound tech may get a different measurement than another ultrasound tech. For absolute certainty, if there are no complications, you may want to wait one week after the gestational sac reaches 25mm to verify the empty sac.

Yes, a blighted ovum diagnosis is one of the most miserable diagnoses you will ever receive. The waiting is torture but a number of women have waited it out and found their babies.

Saturday, March 21, 2015

Often when you find out that your diagnosed 'miscarriage' is actually a viable pregnancy, the shock and joy are overwhelming. Many women continue on with their pregnancies and these doctors continue to misdiagnose miscarriages.

Some women go on to write letters to their physicians and the hospitals or medical centers where they practice. If we want to prevent misdiagnosed miscarriages, I think this is a great idea.

Later she emailed me to share that her baby boy had been born! So exciting. She also shared with me the letter she sent to the hospital as well as their response. I asked permission to share this letter/response and she gladly gave it. Hopefully this letter can help other women when they have been misdiagnosed.

Here is Kerry's e-mail to the hospital (I've blocked out any identifying dates and names blocked out for privacy reasons):

Hi there,

If you could please pass this on to the manager of your obstetric ultrasound department it would be greatly appreciated.

This
email is regarding an early pregnancy ultrasound that I had performed
at your xxxxxx department on xx xxx xxxx, ref: xxxxxx (see
attached scanned report)

Basically
I was told that my ultrasound appearance at 6 weeks 5 days, was
consistent with a blighted ovum but I’m now happily 17 weeks pregnant!
I understand that the doctor’s report (Dr xxxxx xxxxxx) needed to simply describe what the ultrasound found,
however, I think they should have quantified their conclusion with a
statement that these early scans can sometimes be wrong and that further
monitoring is advised (given these early assessments have been wrong in
the past and that there are some factors that can influence the image).
For example, I had a tilted (retroverted) uterus which I wasn’t aware
of until a later scan (and the lady performing my initial scan at xxxxxx didn’t notify me of this and I feel she should have, given this
can interfere with the image and is quite a common occurrence especially
in second pregnancies).

After
doing some research on blighted ova, I found out that my story can be a
rather common occurrence – they receive a few cases each month
apparently, on the following website: www.misdiagnosedmiscarriage.com/mycommunity

In
conclusion, I just wanted to write this email in the hope that future
blighted ovum ultrasound reports may hopefully have a
quantitative/explanatory note at the bottom of them, outlining that
these early scans can sometimes be incorrect and for the patient to
follow up with later scans if they want to. This is in the hope that
people don’t rush out to have a curette performed (like I was intending
to do) when they may indeed still be pregnant.

Thank you for your time.

Regards, Kerry

and I will share the hospital's response (again, I've blocked out any identifying names for privacy reasons):

(you may click on the image of the letter for easier reading)

We do know that dates are often one to two weeks of with a tilted uterus and, thankfully, more and more doctors seem to be recognizing this as well. In fact, I excitedly blogged this last year when I found the American Pregnancy Association was finally acknowledging the link between the retroverted uterus and 'hidden' babies. Here is that post:

Also, in reference to the letter, I also believe miracles happen but in the case of blighted ova being misdiagnosed, really, it's not so much a miracle when the baby is found as much as it is a patient doctor who waits until a growing gestational sac is at least 25mm before even suggesting a blighted ovum.

Thursday, March 19, 2015

I was just watching a sweet video in which family was shocked to find out the new baby was a boy. They were shocked because they had been told during an ultrasound that they should expect their second daughter.

Same thing happened to us only we were told we were having our second son. Indeed my own daughter (yes, the one who was also the 'blighted ovum') was determined to be our son at our second trimester ultrasound.

My husband and I already had a son and decided we just wanted to be surprised at the next birth. We told the doctor this a number of times and the ultrasound tech. This was our longer second-trimester ultrasound. She took all sorts of measurements but made sure not to refer to the baby's gender. After awhile, another ultrasound tech came in to take her place. They spoke for awhile. As the new tech took over scanning, I was just getting ready to make sure she knew we didn't want to know the gender when she announced excitedly that it was a boy. Sigh...she saw our disappointment. Not because the baby was a boy but because we had wanted to be surprised. She apologized profusely. Toward the end of the ultrasound, she said let me take one more look. She took a couple minutes and told us "Not to count our chickens before they were hatched," but she'd already announced our 'son' and this was to be our last ultrasound.

And, so we prepared for our baby boy. Thankfully, I still had a lot from my son so I didn't spend too much. I did buy a new stroller and carseat, both in light green. I also bought a bouncy seat in blue but that was about it.

So, my water broke and long crazy story short but we get my husband home from another state before they take me in for my C-section. With my husband standing there holding my hand, they pull out our baby and announce, "It's a girl!"

Whoa, total shock! I had two doctors in there and I remember I just kept asking, "Are you sure he's a girl?" They'd laugh and assure me *she* was a girl. Hubby even assured me the baby was a girl but he just looked like he was in shock so I didn't put too much stock in his assessment. Finally, they had her cleaned up and brought her over. Yep, noticeable lack of body parts. She was a girl!

So amazing! It took me a month or so of changing diapers before it really sunk in I think. I had just gone about four or five months believing she was a boy.

And, that girl is all girl. She's my dancer and my musician. She loves life to the fullest and she has made our world a brighter place.

Wednesday, March 18, 2015

After my own misdiagnosed miscarriage scares, I love that women now have a place online to wait out their own miscarriage diagnoses. Often a miscarriage is a miscarriage but there have been too many misdiagnosed over the years to ignore.

I started the Misdiagnosed Miscarriage site in 2005. Wow! Just realized the site is a decade old. So many miscarriages have been misdiagnosed in those ten years.

Although I try to keep up with the site, I also keep this blog and write informational pages on Hubpages. I find that my articles off the site help get the word out there that sometimes miscarriages are just diagnosed too soon. Along with keeping up with those comments as well as emails I receive daily, I don't often have the time I would like to spend on the site.

Today I was playing a bit of catch up.

I was able to share four women's stories on the Misdiagnosed Miscarriage forum and got to read the update of one woman whose misdiagnosed miscarriage was born!

Let's start with Trish's story. Trish's doctor for some reason had the antiquated notion that with hCG levels over 10,000 a baby should be seen. She was only five weeks when he decided she needed a D&C the next day! Thankfully, Trish decided to seek a second opinion. Just one week later and her baby was found with a strong heartbeat.

My thoughts: This doctor was so irresponsible in his diagnosis. I have no doubt he has taken far too many babies, far too early. I can't say it enough, hCG levels are NOT important. If they are in the normal range, they can rise, plateau or even drop and still be normal. Also, we have had women whose levels were well over 100,000 before even seeing their baby on an ultrasound.

Our next two stories are IVF stories. Strawberry and Clara both were diagnosed after undergoing IVF. Strawberry looked a week behind and, at her next appointment, was told that her hCG levels were not doubling in two days so, without a doubt, this was not a viable pregnancy. Clara's doctor could not see her baby at 5 weeks 5 days and also said without a doubt this was a miscarriage. Both women were told they needed D&Cs. Both women were misdiagnosed.

My thoughts: Misdiagnosed miscarriages after IVF are far too common. I found a study some time ago that stated that up to 1 in 3 women undergoing IVF look smaller on the ultrasound and their babies are found later. Even with IVF, I'm a firm believer that a blighted ovum should never be suggested before nine weeks. Here is the page I put together on Misdiagnosed Miscarriage After IVF.

At about six and a half weeks, Karlita was rushed to the ER by her husband. She was diagnosed with hyperemesis gravidarum. The ultrasound showed only an empty sac and she was told that she needed to prepare to miscarry or have a D&C. Fortunately Karlita had another ultrasound where they found their baby's heart beating away.

My thoughts: Doctors in the ER are wonderful. They save lives every day but they are not experts in every field. They are also overworked and, too often, rushed. For this reason, unless there is an immediate need (i.e. positive ectopic diagnosis or some other serious condition), getting another opinion if you haven't actually miscarried is strongly advised. Too many pregnancies are misdiagnosed in the ER as being miscarriages.

And, last but not least, our misdiagnosed baby!

Jennessn was rushed in for an ultrasound last year due to bright red bleeding. At only about five to six weeks, they only saw the gestational sac. Right then and there, they determined the pregnancy was non-viable. Then, because the hCG levels has only risen from the 4000s to 6000s in 48 hours, that cinched it. They told her this could be ectopic and her doctor's office was trying to schedule her for a D&C. Thankfully, she sought a second opinion. Her baby boy is now five months!

My thoughts: I'm so excited for Jennessn! Those doctors were so wrong. It can be completely normal to have an empty-looking gestational sac up until nine weeks or so and her hCG numbers were rising normally. Too many women are misdiagnosed. Second opinions can save lives.

Friday, January 30, 2015

Catu shared this week the story of her medical miscarriage. She was unsure how far along she was. They gave her a scan, saw nothing in the sac and came back one week later for a follow-up scan. Still nothing. So what did they do? They diagnosed her with a miscarriage and gave her the choice to have a D&C, medical miscarriage (taking pills to end the pregnancy) or have a natural miscarriage.

She went through the heavy bleeding and the pain. Just a side note...I've had women tell me who have had both a natural miscarriage and a medicated one that the medicated one is usually even more painful. She went to the hospital where they gave her another scan and, yes, they found the heartbeat.

I am so thankful that her little gal (yes, they've found out they are having a girl!) is fine. She is now 21 weeks. But, I've talked to other women who were diagnosed with a miscarriage, went the medicated miscarriage route and found out that there was a viable baby. Most often those babies end up miscarrying from the medication. We've also had a couple babies on the site survive so there is hope if this has happened to you.

And, this is why I so dislike the idea of a medical miscarriage.

If you've read my blog, you know that I love the UK's new guidelines. Wait until the sac measures at least 25mm and then, if needed, do a follow-up scan one week later. This puts women at nine or so weeks.

Mifepristone is NOT recommended after nine weeks. Go ahead and read about it on the Reproductive Health Technologies Projectsite. They want to promote the use of this pill but acknowledge it should not be used after nine weeks. Many women will miscarry by nine weeks naturally. After nine or ten weeks, if you are going to miscarry and haven't, you may end up needing a D&C.

In other words, if your gestational sac is growing, your doctor should not even be suggesting a blighted ovum until the sac is 25mm. Some guidelines recommend waiting an additional week after you reach 25mm to just be sure. Of course, this is if there are no serious complications (i.e. ectopic, partial mole, etc...).

Why do I feel so strongly about this? My gestational sac at 7 weeks 5 days measured 21.5mm and still looked empty. I turned down the D&C for the second time. At 8 weeks 5 days, my sac measured 28.5mm and we saw my little one with a very strong heartbeat. Since I shared my story, many more women have had similar stories.

Your doctor really should not be diagnosing a blighted ovum if your gestational sac is still less than 25mm and growing. If he or she is, might be time to find a new doctor.

Wednesday, January 14, 2015

On the Misdiagnosed Miscarriagesite, many women are worried because their hCG levels are not doubling in 48 hours. For the life of me, I don't know why some physicians are bound and determined to scare women when non-doubling hCG levels can be quite normal.

"Within the first 2-4 weeks after fertilization, HCG usually doubles
every 48-72 hours. That usually corresponds to HCG levels below 1200 IU.
From 1200-6000, the HCG usually takes 72-96 hours to double. Above 6000
IU, the hCG often takes over four days to double."

And as the pregnancy progresses through the first trimester, those numbers are going to slow quite a bit. They will then plateau and begin dropping. This is normal. I've talked to women with numbers around 30,000 to 40,000 and their doctors are worrying them because the levels are not going up. They've been fine. In fact, according toHealthline, these are normal levels for women:

"The level will reach its peak in the first 8 – 11 weeks of pregnancy and then will decline and level off for the remainder of the pregnancy."

Really, hCG levels are useful in determining that you do not have ectopic pregnancy. After they find the gestational sac, most doctors will stop taking hCG levels because your numbers can rise and be normal. They can plateau and be normal. They can drop and be normal.

Sunday, January 11, 2015

Flashing back to the year 2002. There was NOTHING on the internet about misdiagnosed miscarriages. A search yielded plenty of 'miscarriages of justice' but nothing on wrongly-diagnosed miscarriages. Indeed, the only information I found was that miscarriages were not misdiagnosed and any suggestion otherwise just seemed to be an irritant to whomever was asked.

Thankfully, my miscarriage was indeed misdiagnosed. I shared my story online and women found it. They started emailing me so thankful to find some hope. Some of those women ended up being misdiagnosed as well. From those stories, The Misdiagnosed Miscarriage was born and many babies' lives have been saved as a result.

I've seen wonderful changes in the last ten-plus years. The medical community is starting to take note. Sure, there are *still* doctors who claim miscarriages are never misdiagnosed but there are many more who recognize that some babies just appear later. It has nothing to do with the actual baby being too small. It's all about the ultrasound equipment.

During the last decade, I've hoped for one study and it hasn't happened...yet...

I would like a study that examines the relationship between the transvaginal ultrasound and the retroverted uterus during the first trimester and I'll tell you why.

It didn't take too many emails for me to realize that many of us had something in common: The majority of us had a tilted uterus.

This study discovered that transvaginal measurements were not as accurate as transrectal measurements in the retroverted uterus. Of course, they weren't measuring babies but the results were intriguing.

Of course, not many women are going to want a transrectal ultrasound during pregnancy but, this study does demonstrate that measurements may just not be as accurate as your doctor would like to believe if you have a tilted uterus.

If we could get a study done that followed a large group of women during the first trimester, I already know what they would find. They would find that when women have a tilted uterus, she looks one to two weeks behind during the first trimester. Later, when the baby is large enough to be seen, the measurement dating tends to be more accurate. We've seen this over and over on the site.

Now, if somebody would just do this study, perhaps physicians would be a bit more patient and not in quite as much of a rush to end a pregnancy that might still be viable.

Looking at that list and there are just too many reasons miscarriages are misdiagnosed. I've read that if doctors would just take a wait-and-see approach (and not scare women by bringing up the 'M' word), we could do away with the vast majority of misdiagnosed miscarriages.

No matter what, unless there is an urgent need to end the pregnancy, be certain you are indeed miscarrying before having your pregnancy ended. Often, that means waiting until nine or ten weeks.

1.4.9 If the mean gestational sac diameter is
less than 25.0 mm with a transvaginal ultrasound scan and there is no
visible fetal pole, perform a second scan a minimum of 7 days after the
first before making a diagnosis. Further scans may be needed before a
diagnosis can be made.

1.4.10 If the mean gestational sac diameter is 25.0 mm or more using a transvaginal ultrasound scan and there is no visible fetal pole:

seek a second opinion on the viability of the pregnancy and/or

perform a second scan a minimum of 7 days after the first before making a diagnosis.

1.4.11 If there is no visible fetal pole and the mean gestational sac diameter is measured using a transabdominal ultrasound scan:

record the size of the mean gestational sac diameter and

perform a second scan a minimum of 14 days after the first before making a diagnosis.

1.4.12 Do not use gestational age from the last menstrual period alone to determine whether a fetal heartbeat should be visible.

1.4.13 Inform women
that the date of their last menstrual period may not give an accurate
representation of gestational age because of variability in the
menstrual cycle.

Without a doubt, these are the best guidelines I've seen. If doctors around the world would adopt these guidelines, the number of misdiagnosed miscarriages would plummet.

Generally speaking, the gestational sac will measure at least 25mm by about nine weeks or so for the vast majority of women.

Too many women have shared stories of being misdiagnosed because their hCG levels were really high with no baby seen or their doctor didn't believe there was hope because they were eight weeks. Don't focus on these things. Focus on the size of the gestational sac and whether it is growing. Yes, it still may end up as a blighted ovum but, if you end your pregnancy before the sac reaches 25mm and it is still growing, you may be ending a viable pregnancy.

DISCLAIMER

This blog is for informational purposes only. The author is not a medical professional. The information contained within this blog is meant to supplement the information given to you by your own physician but is not to be used in place of your physician's medical advice. When in doubt, always seek a second opinion by another medical professional.